Intro, and please give your feedback

[TinaFish]

Hi TinaFish . . . I'm sorry that you are struggling and feeling so scared right now. My husband has stage 4 colon cancer and has been fighting since May 2017. I think you have a lot of reasons to be hopeful . . . I'm not sure where you're being treated, but it sounds like your docs are doing the right thing at this point. Do you have someone who attends your appointments with you? My husband jokingly calls me "his secretary" because I keep track of everything for him, and I am also the one who shows up with his list of questions (and I take notes as well). The one thing that we've learned is that every cancer patient's journey (even stage 4 patients) is different and we try not to look at the stats, but to look specifically at his case. One poster suggested a focus on the liver mets . . . have you looked into a major cancer center (not sure where you live) . . . I can tell you a quick story that gave us so much hope in the beginning . . . My mom's boss (and we're talking many, many years ago) was diagnosed with stage 4 colon cancer that had spread to her liver . . . her case was extremely dire and she was told to get her things in order . . . that was until she went to MSK and was treated by Dr. Kemeny . . . my mom's former boss is alive and well today, and she is cancer free. I always keep her in my mind when we hit a rough patch.

I know you posted about colostomy/ileostomy . . . my husband is opting for a permanent colostomy after his surgery in late August . . . he's actually looking forward to it because his bathroom issues have been frustrating (to say the least) . . . he's a very active guy and is tired of running off to the bathroom rather than enjoying life. I can't help but wonder where we would be right now if he had his entire rectum removed (and a permanent bag) during his first surgery . . . can't think that way though . . . stay strong and stay positive and keep doing your research . . . sounds like you've learned so much already . . .

Sincerely,
jep

Thank you. You're right - there are so many variables. Does Dr. Kemeny focus on liver mets? I live in Los Angeles, but until two months ago, I thought of myself as super healthy... so I have Medi-Cal as my health insurance. I never thought I'd need to pay out of pocket for better health insurance. You know what sucks? If I got private health insurance now, 1) Medi-Cal would drop me if they found out, and 2) the new insurance company would refuse to cover treatments for a pre-existing condition. They would refuse for one year. So that means that for a year, I would have zero coverage for my cancer treatments. I am, however, in the midst of applying for permanent disability, and if I'm on that for two years, then the state will change me from Medi-Cal to Medi-Care. I thought Medi-Care was only for older people, but I was wrong. And Medi-Care is purportedly much better than Medi-Cal, although I don't know how or why. However, I am hoping to beat this illness before two years from now rolls around...

All of that having been said, I adore my oncologist and I think she's so knowledgeable. I think she's just following normal protocol to treat me right now, and I think a Cedars Sinai doctor would be following the same protocol.

[jep]

Yes, I believe Dr. Kemeny specializes in the HAI pump to directly treat liver mets .....I’m sure you can find a great doc/center in Cali (if you end up looking for another opinion). My husband has his primary onc, but we also send all his records to MSK, and visit his onc there as needed....it’s not ideal, but our local cancer center is 5 mins away....and it’s so nice to be able to confer with MSK when we hit a crossroad....I think you are so smart to apply for disability, and it’s great that you like your oncologist....don’t hesitate to touch base with other doctors as well....our MSK doc told us that great oncs do not have ego issues and are more than happy to work with others....and we’ve found that to be true!
Good luck and praying for you and so many others <3
jep

[Jacques]

... I guess I'm just wondering what people go through after being NED for a long time...

For your information, there is a large body of research concerning life after cancer. This area of research is often published under the rubric of "Survivorship".

After a patient has become NED, there is a constant, never-ending battle against what is sometimes called "treatment-induced disorders". These are generally the non-cancerous long-term after-effects of cancer treatment, i.e. after-effects of the surgery, radiation, and/or chemotherapy that were necessary to rid the body of cancer.

Here is an overview of some of the research in this area:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59801&p=475292&hilit=survivorship#p475292

[TinaFish]

Jep, I read about the HAI pump. It seems that a lot can go wrong with it. I'm scared. I think I need to do more research.

Jacques, thank you for addressing my question, and for the links. Cancer really is one of the most evil, abominable things on this earth.

[Jacques]

...
There are a million things that could be said at this point, so I’ll just focus on one: have you had a surgical opinion on the liver yet? If not, I would prioritise getting an opinion directly from a hepatobiliary (liver) surgeon, that does a high volume of liver resections (preferably at a major cancer centre). Not a general surgeon, and not an oncologist reading your scans. Your odds of a long-term cure increase dramatically if a liver resection can be achieved, either now or via other treatment first.

The challenge now is going to be to balance the need to focus on the liver, with managing your symptoms from the rectal tumour. As your onc said, the light chemo dose during radiation may not be enough to control the liver mets. My suggestion would be to have a discussion with the oncologist about their overall goals from treatment ....

TinaFish -

Time is running short now that you are finishing your last cycle of neo-adjuvant chemo. Soon they will be reviewing your options for possible surgery.

I think you need to follow the suggestions given by Rock_Robster and Pyro70 so that you are focusing your attention on the main issues at hand right now, namely, determining the status of your mets and what your medical team is planning to do about them.

You can get more information in this area, including anatomical diagrams of the liver, by searching the Internet for TECHNIQUES FOR HEPATIC RESECTION.

Do you know how many liver mets you have and exactly where they are located? This is the first step in determining whether they are resectable or not. Also, it would be good if you could read this document on liver resection https://academic.oup.com/oncolo/article/13/1/51/6396574?searchresult=1

By now you should be completely familiar with the NCCN standard-of-care for your particular diagnosis (rectal cancer with metastatic involvement). This is so that you can understand the options that your medical team have available for setting up your treatment plan. See the relevant REC sections of the following document:

https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf

By the way, are you planning to be treated at Cedars-Sinai Medical Center?

[stu]

I agree with the above post . One factor that I do think influenced my mum’s longevity was having sought out windows of opportunity with the top surgeons and being ready to go when it opened up . We were lined up and had our elbows out ready to go .
Stu

[boxhill]

Excellent advice from Jacques and others. Become informed about your disease and possible treatments. Become informed about at least the basic genetics of your tumor (MSI, KRAS, BRAF, HER2, and a few others) that can determine the potential courses of treatment. Make sure that your team shares your goal of getting to NED and living for your children--and yourself! Don't settle for passivity, and don't settle for "this is what we usually do." Be able to ask questions and participate in developing a plan.

I want to address your support situation. Someone must have been taking care of your children while you were in the hospital, right? Do you have friends who have offered to help you? If so, take advantage of it NOW. Not only that, buy let them organize the help themselves. I bet there are those happy to do so. You will have at least one take-charge friend or acquaintance or a Caring Team at you church, if you have one, who will want to do this. There are various online organizational tools such as Meal Train that make it easy. Let them drive you to chemo and appointments, keep you company, and drive you home.

You need to concentrate your energy on your kids and yourself now.

I am so sorry that you are contending with this on top of your losses. This must be a terrible time for your family. Soak up what support you can, physically, practically, spiritually. I don't know what the situation is with you kids, who have after all just lost a parent, but in my area there is an organization called The Center for Grieving Children which does remarkable work with families. You might find something like that in your area.

http://www.cgcmaine.org/about-us/

My very best to you.

[TinaFish]

...
There are a million things that could be said at this point, so I’ll just focus on one: have you had a surgical opinion on the liver yet? If not, I would prioritise getting an opinion directly from a hepatobiliary (liver) surgeon, that does a high volume of liver resections (preferably at a major cancer centre). Not a general surgeon, and not an oncologist reading your scans. Your odds of a long-term cure increase dramatically if a liver resection can be achieved, either now or via other treatment first.

The challenge now is going to be to balance the need to focus on the liver, with managing your symptoms from the rectal tumour. As your onc said, the light chemo dose during radiation may not be enough to control the liver mets. My suggestion would be to have a discussion with the oncologist about their overall goals from treatment ....

TinaFish -

Time is running short now that you are finishing your last cycle of neo-adjuvant chemo. Soon they will be reviewing your options for possible surgery.

I think you need to follow the suggestions given by Rock_Robster and Pyro70 so that you are focusing your attention on the main issues at hand right now, namely, determining the status of your mets and what your medical team is planning to do about them.

You can get more information in this area, including anatomical diagrams of the liver, by searching the Internet for TECHNIQUES FOR HEPATIC RESECTION.

Do you know how many liver mets you have and exactly where they are located? This is the first step in determining whether they are resectable or not. Also, it would be good if you could read this document on liver resection criteria:
http://theoncologist.alphamedpress.org/content/13/1/51.full

By now you should be completely familiar with the NCCN standard-of-care for your particular diagnosis (rectal cancer with metastatic involvement). This is so that you can understand the options that your medical team have available for setting up your treatment plan. See the relevant REC sections of the following document:

https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf

By the way, are you planning to be treated at Cedars-Sinai Medical Center?

Thank you so much for all of that. Why do you say I'm finishing my last cycle of non-adjuvant chemo? I'm sorry, I don't even know what "non-adjuvant" means. I'm going to have my 3rd cycle of chemo on August 7. After that, I'll have a scan to see how my body is responding. My doctor said that we're going to do six cycles of chemo to target my cancer as an all-over-body approach.

[TinaFish]

Excellent advice from Jacques and others. Become informed about your disease and possible treatments. Become informed about at least the basic genetics of your tumor (MSI, KRAS, BRAF, HER2, and a few others) that can determine the potential courses of treatment. Make sure that your team shares your goal of getting to NED and living for your children--and yourself! Don't settle for passivity, and don't settle for "this is what we usually do." Be able to ask questions and participate in developing a plan.

I want to address your support situation. Someone must have been taking care of your children while you were in the hospital, right? Do you have friends who have offered to help you? If so, take advantage of it NOW. Not only that, buy let them organize the help themselves. I bet there are those happy to do so. You will have at least one take-charge friend or acquaintance or a Caring Team at you church, if you have one, who will want to do this. There are various online organizational tools such as Meal Train that make it easy. Let them drive you to chemo and appointments, keep you company, and drive you home.

You need to concentrate your energy on your kids and yourself now.

I am so sorry that you are contending with this on top of your losses. This must be a terrible time for your family. Soak up what support you can, physically, practically, spiritually. I don't know what the situation is with you kids, who have after all just lost a parent, but in my area there is an organization called The Center for Grieving Children which does remarkable work with families. You might find something like that in your area.

http://www.cgcmaine.org/about-us/

My very best to you.

I have one sister. She "kindly" stayed with my children for ten days while I was in the hospital, and then grifted $1,000 from my father as compensation for her time. She then stayed at my house a few weeks later, while I was super sick from my 2nd round of chemo, and a few days later, when I was feeling a little better, she reported me to CPS because she didn't like the fact that I spanked my 7-year-old son ONE TIME, on the butt, after a 5-hour-ordeal of him refusing to clean his room and me taking privileges away. Well, maybe if my sister wasn't such a passive idiot, then my son's room wouldn't have become so messy while she was caring for him! He called her that evening with his Echo Dot! Did you even know that you could do that?? He was mad at me and I don't know how much he exaggerated, but my sister called me later that night (and didn't tell me that my son had called her) and on my own, I told her the whole story about what had happened that day because I was so frustrated. Five days later, I've got CPS knocking on my door. Can you believe?? My own sister kicked me when I was down! She's had mental problems since high school, so really, I should have known better than to bring her so close into my family, but I needed help!! And I love her! But I've forever cut her out of my life and my childrens' lives after this. No matter how much you love someone or how much you can forgive them, you can't let them into your life if they can't be trusted. And, of course, I've taken her phone number out of the Amazon contacts, Jesus Christ! She won't even admit to reporting me to CPS. She claims that she called them anonymously, just asking questions and never gave them my name. Yeah, so somehow they became psychic and figured out my name and address? So insulting to my intelligence. She just shot herself in the foot so badly, she will never see my children again. And no, she doesn't have a job. Mentally, she can't handle a job. If she had taken unpaid time off of work to care for my children, that would be different. But customarily, she just spends her days screwing around on her computer or meeting her friends for lunch. She's living off of alimony and money that her ex-husband gave to her to pay her off (the appreciation value of the house they bought together) so that he could keep the house.

So I have an assistant who works for me with my online business, and I'm just going to pay her to babysit when I need it. I thought my sister's time was free, but it turned out to be much more expensive than anyone would have thought. $1000 paid to her by my father, $500 worth of groceries swindled out of my father (how does she need $500 worth of groceries for herself, a 7-year-old, and a 3-year old for 10 days, when the house was FULLY STOCKED when I went to the hospital?) and now $6000 that I had to pay to attorneys to get CPS to go away. It's been a super crappy week. My father is also disgusted with my sister and wants nothing to do with her.

Oh, my "best friend", whom my kids hate, also stepped in and helped to alleviate my sister from time-to-time when I was in the hospital. She remarked to my father that she can't be taking time off of her stupid Rover dog-sitting business, and my father inferred that she wanted money too. So he paid her $200. Yeah, wonderful best friend.

Sorry for the rant, I'm just so angry at my sister. But yes, I need help with childcare. I need help with everything when I'm sick from chemo. And I don't have money to pay for childcare, especially now that I have a $6000 credit card bill that needs to be paid off...

[Jacques]

... Why do you say I'm finishing my last cycle of non-adjuvant chemo? I'm sorry, I don't even know what "non-adjuvant" means.

I didn't say "non-adjuvant chemo". I said "neo-adjuvant chemo".

Neo-adjuvant is defined as:

Neoadjuvant Therapy: A treatment given before the primary therapy. Chemotherapy and radiotherapy are often given before surgery to reduce the size of a tumour or to render surgery less complicated. Hence, the chemotherapy and radiotherapy would in this case be considered the neoadjuvant therapy.
Reference: http://archive.colorectalcancercanada.com/en/research/glossary-terms/#n

If I'm not mistaken, you said earlier that the plan was to consider combined chemo/radiotherapy after 3 cycles of full-strength chemotherapy.

It would help if you could create a signature here that outlines your diagnosis and the treatment plan that you are following.

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

[stu]

Hi Tinafish,
Treatments tough on its own . Sorry you don’t have more support around you to help with your children . They are very young and still need so much love and input at that stage .
Hope things pick up a bit .
Stu

[TinaFish]

... Why do you say I'm finishing my last cycle of non-adjuvant chemo? I'm sorry, I don't even know what "non-adjuvant" means.

I didn't say "non-adjuvant chemo". I said "neo-adjuvant chemo".

Neo-adjuvant is defined as:

Neoadjuvant Therapy: A treatment given before the primary therapy. Chemotherapy and radiotherapy are often given before surgery to reduce the size of a tumour or to render surgery less complicated. Hence, the chemotherapy and radiotherapy would in this case be considered the neoadjuvant therapy.
Reference: http://archive.colorectalcancercanada.com/en/research/glossary-terms/#n

If I'm not mistaken, you said earlier that the plan was to consider combined chemo/radiotherapy after 3 cycles of full-strength chemotherapy.

It would help if you could create a signature here that outlines your diagnosis and the treatment plan that you are following.

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

You're right, I did say that the plan was to do three rounds of chemo and then assess the idea of radiotherapy. That's what my oncologist originally said. She was thinking that I was suffering so much from tenesmus that I needed radiotherapy to shrink the tumor asap. She says the tumor is causing tenesmus. However, the tenesmus has improved a lot the past few weeks, so she changed the plan to six rounds of chemo. But we're still going a scan after round three, to see how I'm responding.

Thank you for the helpful link to create a signature. I honestly felt like I needed to learn more before I did so. I don't understand half of the signatures I see on this forum... like this information in your signature, Jacques - it's totally over my head: Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1

[Jacques]

TinaFish -

If you are being treated at Cedars-Sinai, you can check out their patient support programs to see if they have anything that would be of help to you.

https://www.cedars-sinai.org/programs/cancer/we-treat/colorectal/services/colon-cancer/for-patients.html

[TinaFish]

TinaFish -

If you are being treated at Cedars-Sinai, you can check out their patient support programs to see if they have anything that would be of help to you.

https://www.cedars-sinai.org/programs/cancer/we-treat/colorectal/services/colon-cancer/for-patients.html

I wish I was being treated at Cedars Sinai. They don't accept Medi-Cal.

[TinaFish]

Spoke to oncologist today, she said my liver is currently not resectable but we're hoping that the chemo will help us get to that point. She also said that my MSI indicates that immunotherapy would not be helpful to me.

I finished my capectabine (sp?) three days ago, but my stomach is worse today than it's been in a long time - diarrhea, severe bloating, my whole goal in life today was to try to pass gas so I could feel better. It's really difficult to get the gas out! My stomach is so huge, it looks like I'm four months pregnant! I'm so uncomfortable. I took Pepto Bismol earlier today, and a Bentyl too. Is this normal?? I mean, before I ever went to the hospital and got diagnosed, I felt fine! Never any discomfort or pain, never any tenesmus, just a little bit of blood in my poop every 3-4 weeks. But I go to the hospital, spend ten days there (had oxaliplatin and 5FU via IV the last two days I was there), and then two days after I'm home from the hospital, I've got horrific tenesmus! I'd never had it in my life before that! I didn't even know there was a name for it! The gas, diarrhea, and tenesmus were unrelenting until I got my 2nd round of chemo. After recovering from that, I felt pretty ok, except that the diarrhea has been incessant. I finally learned how to control it with the correct dose of Imodium, so it's way more tolerable. And it seems that when I have diarrhea, it triggers the tenesmus. If there's the tiniest bit of anything in my rectum, my body wants to push it out. Is all of this diarrhea and gas normal for someone going through the first rounds of chemo? Someone who hasn't had any treatment BUT chemo?